The Weighing

With hospice in the mix, I'm making decisions differently.

Photo by Shubham Sharan on Unsplash

I told a friend that Mike had been admitted to a hospice service earlier this month. She gave me the sympathy head tilt. You know the one: ear to shoulder, eyes closed, often accompanied by a sigh and followed by a shake of the head. It’s a maneuver meant to say I’m so sorry.

“No, actually, this is a good thing,” I told her. “Now I have people I can reach out to with questions about behaviors and meds, and I get a quick response. Plus, the hospice service is providing most of Mike’s medication refills and helping out with some of his supplies. They’ve taken a lot of the work off my shoulders.”

I did not add For the first time, I feel like I’m not in this alone. I didn’t want my friend to feel as if her support had been meaningless. Because of course that’s not the case—I’ve deeply appreciated knowing I have people I can lean on. But there’s a difference between having good friends who support me and having a team of professionals on board to help me make decisions in a whole new way.

For instance: it appears Mike might be developing another UTI, part of the cause for his most requent hospitalization. Frequent UTIs are common in late-stage Parkinson’s (and in dementia patients generally), but the hospice protocol is not to head off a potential infection; instead, they wait to see whether a UTI progresses to fever, blood in the urine, etc. Then they consider intervening with antibiotics.

I understand this rationale. After all, the purpose of hospice isn’t keeping someone healthy—if you’re healthy, then you’re not on hospice. So they intervene only when necessary to keep someone out of the hospital.

I’ve told everyone at Mike’s memory care facility that this is my primary goal. But I’ve just begun to realize that I didn’t fully understand what I meant when I said that.

My dad was on hospice for many years before he died from a complex constellation of illnesses, so I had a general idea of how it worked. A nurse now visits Mike once a week at his memory care facility and texts me about that visit afterward. If I have medical concerns between visits, I text her. In the evenings and on weekends, for emergencies, an on-call nurse is always available.

Having these pieces in place was deeply comforting until I bumped up against the UTI protocol. That’s when I first acknowledged that none of the people now involved with Mike’s care—including me—are in the business of trying to keep him alive.

I knew that, of course. Intellectually. But what that means, I hadn’t really considered.

Infections develop in people with dementia because their immune systems don’t work as efficiently as they once did. But using antibiotics to treat infections can actually make things worse, because they kill off good bacteria along with the bad stuff. That leaves a person in fragile health vulnerable to new infections. Add in an issue like Parkinson’s—which impacts the immune system and causes muscle stiffness, which restricts the ability to cough efficiently, which can lead to respiratory infections—and it’s pretty clear that antibiotics will be fighting an uphill battle.

So the goal is comfort, not cure. That means we have to weigh the options differently. How many infections has he had recently? How many were treated with antibiotics? Are more antibiotics likely to help, or are they just going to put him at risk a secondary infection? Do we want to take that risk, or should we wait and see what happens?

When the goal is not to restore someone to good health—when good health is no longer an option on the table—then the questions that make up the weighing process have to change as well.

The day we thought my dad was going to die, after many years of poor health and hospice care, my family gathered in the house where my brother and sister and I had grown up. We watched the Coen brothers’ remake of True Grit seated around the edges of a hospital bed in my parents’ living room . I’d seen the original movie at a drive-in theater with my parents when I was little—my dad had been a huge John Wayne fan. But I think he would have liked the remake, too, if he’d been able to watch it with us.

I remember thinking This is perfect. This is exactly the way he’d want to go.

Except he didn’t. The morning my dad’s body finally gave out, three days later, I was supposed to be on a plane back to Texas. I’d flown home for a quick visit with my parents, only to have it take this very unexpected turn. Mike and our kids were now making last-minute plans to fly to Boise for my dad’s funeral.

Being on hospice definitely doesn’t mean death is imminent—that much I learned from my father’s slow decline. But there’s never any way to know when or how a life will end. That’s especially true with a complex patient.

Which is exactly what I told the woman from the cremation service I spoke with earlier this week, when she asked about Mike’s prognosis.

“This is one of those situations where nobody really knows anything,” I said. “Mostly, I just want to be prepared.”

She nodded. “In situations like this, it’s good to control what you can,” she said.

I’d been putting off gaining that particular measure of control for almost a month, so I wasn’t sure I agreed. But as it happens, she was right: the weight of knowing what I needed to do was harder to carry than the fact of having it done.